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Maren & Ryan Layton's Fundraiser:

Team Rett Boston Marathon 2013

Maren &  Ryan's Photo
Maren &  Ryan's Photo
Maren &  Ryan's Photo
Maren &  Ryan's Photo
Maren &  Ryan's Photo
Maren &  Ryan's Photo
Maren & Ryan Layton

THE STORY:

Our sweet little Leah was born February 22, 2007, simply perfect. Her first year was a dream. She ate and slept so well and learned to do so many things on her own and say so many words and phrases. It took her a little longer than normal to crawl, cruise and walk, but her determination got her through with a smile on her face. She crawled at 19 months and walked at 26.

Just around the time she began walking, we noticed a few words disappearing. She was enrolled in an early start program and it was her teacher there who suggested that we get Leah tested for Rett syndrome. So we did, and our lives were never the same.

I still remember receiving the phone call from Leah’s neurologist on October 30, 2009 that made me drop to my knees on my kitchen floor. My daughter had Rett syndrome. It wasn’t something temporary, something she’d grow out of, something we could overcome through therapy.

Over the next few months, Rett syndrome took Leah’s words and hand use, but it did not take her spirit. Her smiles and giggles can still melt anyone and her bright blue eyes twinkle on the darkest of days.

Leah is now attending kindergarten where she is mainstreamed with a one-on-one aide to help her through her day and keep her safe. She loves learning and loves being with all of her friends every day. She works so hard that a full day of kindergarten simply exhausts her and she often falls asleep on the bus ride home. She loves spaghetti and swimming, her baby sister and sunshine, playing in the snow and swinging. You can always count on a laugh from Kung Fu Panda and she’s pretty convinced she is, actually, Rapunzel.

Leah began suffering from seizures when she was four years old and, although this drains her of a lot of energy, she gets right back up and fights through her days. She is still in diapers, is spoon fed every meal and needs others to help feed her, brush her teeth, bathe her and participate in all other daily activities. She can no longer flip the pages of her favorite books or play with her favorite toys. She can’t vocalize the things she imagines or the questions she has every day. And, unless a cure is found, she never will.

But we believe there is hope that treatments and a cure will be found! Researchers have reversed the symptoms of Rett syndrome in mice. Their work has opened doors to a host of other disorders such as autism and Parkinson’s disease. Two human clinical trials are currently in place and more could be coming. Raising money for the Rett Syndrome Association of Massachusetts will help these dreams become a reality that much sooner.

We have learned so much of patience, kindness, hard work, determination, laughter and love from our sweet little Leah. Though she still walks, she can’t run a marathon. And so we will race for her. Because we believe in her. We have hope that one day, she will run a race - completely different than the one she runs every day of her life.

Thank you for your support!

 

RETT SYNDROME ASSN OF MASSACHUSETTS wrote -

Team Rett FundRacers will be raising money for research in hopes that Rett syndrome can be reversed!

Seen almost exclusively in girls, Rett syndrome is a unique developmental disorder caused by mutations on the X chromosome on a gene called MECP2. A rare disease, the incidence of Rett syndrome is about 1 in 10,000 females. The course of Rett syndrome, including the age of onset and severity varies from child to child. As the syndrome progresses, most children lose purposeful use of their hands and the ability to speak. Other symptoms may include loss of motor skills, breathing and cardiac irregularities, seizures, digestive problems, scoliosis, and tremors.

Although Rett syndrome leaves all girls and women dependent on others for all of their basic needs, tremendous advances in research have been made since the MECP2 mutation was discovered in 1999.

Please support Team Rett in its efforts to fund research that may lead to a cure for Rett syndrome!

$10,986

MONEY RAISED
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  • Suzanne Lieb

    $50

  • Rob and Camden Hillas

    $50

  • Caitlin & Eben

    $50

  • Haley and Spencer

    $100

  • Brandon Woodland

    $20

  • Christina Fanitzi

    $50

  • Snow and Emma

    $50

  • Sophie roux (t'12)

    $50

  • James and Nancy

    $50

  • Thomas Cook and Hanna Smith

    $30

  • Carole and Joe Usaj

    $50

  • Maggie Guo

    $25

  • Lili Li

    $100

  • Anonymous

     

  • Hillary & Kerr

    $50

  • Mary Boylan

    $25

  • Hannah and Len White

    $50

  • Holbrook Family

    $50

  • Henrique Thielen

    $100

  • Rachel Finlayson

    $50

  • Nishant and Christiena Daruka

    $25

  • Toronto Family

    $50

  • Pete Gauthier

    $20

  • garrett deninno

    $50

  • Jon & Cheryl Thomas

    $20

  • Laura and Mike

    $50

  • Andrus Family

    $50

  • The Corbett 4

    $25

  • The Laughlins

    $25

  • The Wade Family

     

  • Megan & Jeff Johnson

    $50

  • Andrea

    $10

  • Maya & Mallory Holmes

     

  • The Wintertons

     

  • Robert & Lisa

    $500

  • Ed, Kelli , Mack , E and D Marshall

    $50

  • Jamie and Leslie Kanter

    $50

  • Chris, Dani and Trae

    $150

  • Anonymous

    $100

  • Dale and Marta

    $100

  • Richard &Janna; Holmes

    $25

  • Anonymous

    $25

  • The Dance Family

    $75

  • parkers

    $50

  • Grandpa & Grandma Layton

    $500

  • Elissa Jones

    $50

  • Anonymous

    $50

  • Haley & Alex

    $50

  • Benson Family

    $10

  • Ben, Eva & Logan Pearson

    $100

  • Emily Honeycutt

    $10

  • Tuck Tripod - Hanover Jobs

    $310

  • Dale and Aubrey Earl

    $25

  • Barnard Fam

    $50

  • Stephanie Hansen

    $25

  • Edward and Margie Marshall

    $1,000

  • Molly

    $10

  • Anonymous

     

  • Kaylynn

    $50

  • Becky Felt Hatch

    $25

  • Anonymous

    $1,000

  • Grandma Stark

    $200

  • Anonymous

    $50

  • Jane Sorber

    $20

  • Kim Bond:)

    $10

  • Steve, Thalene, Allie, Brinn

    $100

  • The Allens

    $50

  • Ankur & Jenny Kumar

    $50

  • Tyler, Abby, and Lucy D.

     

  • Anonymous

    $100

  • Anat and Yury Gimburg

    $50

  • Lissa Jones

    $50

  • Richard & Karen Hauley

    $250

  • Anonymous

    $100

  • Gareth, Aubrey, Alex and Jessica

     

  • Anonymous

    $20

  • Beth & Paul Chiu

    $50

  • Dixie & Lucy Werner

    $20

  • The Bergesons

     

  • Emma and Lucy Kolste

    $100

  • Bri, Geoff, and Remi

    $10

  • Tim, Amy and Amanda Enrico

    $10

  • Anonymous

    $100

  • Ryan Pollick

    $25

  • Josh, Laura, Bryn and Mya

    $50

  • craft fair customers

    $250

  • Dawn

     

  • Anonymous

    $250

  • The Dunegans

    $50

  • ChikaChika

    $25

  • Jessica and Aman

    $20

  • Hussein Nasreddin

    $20

  • Benjie

    $36

  • Claire and Will Barden

    $20

  • Laura and Tyler

    $25

  • Jamie Lippman

    $20

  • JP Cantos

    $50

  • Lars and Dyan Johnson

    $25

  • Jamie Nicholson

    $50

  • James Kanter

    $50

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110% Raised of $10,000 Goal

Boston Marathon News on Twitter John Hancock on Facebook Go to the 2013 Boston Marathon Event Page

The Team: $128,619 TOTAL RAISED SO FAR

Fundraiser Title

Jenn Seney

Amount Raised

$11,607

 

46% Raised of $25,000 Goal

Fundraiser Title

Erica Robertson

Amount Raised

$11,148

 

223% Raised of $5,000 Goal

Fundraiser Title

Maren & Ryan Layton

Amount Raised

$10,986

 

110% Raised of $10,000 Goal

Fundraiser Title

Daniel Warner

Amount Raised

$9,931

Fundraiser Title

Geoff Gillard

Amount Raised

$9,785

 

196% Raised of $5,000 Goal

Fundraiser Title

Zenaida Jimenez

Amount Raised

$9,570

Fundraiser Title

KAREN OBRIEN

Amount Raised

$8,476

 

170% Raised of $5,000 Goal

Fundraiser Title

Lee Ann Coburn

Amount Raised

$7,731

 

155% Raised of $5,000 Goal

Donor Comments

James Kanter

James Kanter

DONATION: $50

5 years ago

Jamie Nicholson

Jamie Nicholson

DONATION: $50

5 years ago

Lars and Dyan Johnson

Lars and Dyan Johnson

DONATION: $25

Good luck on the run tomorrow. You are so awesome for training in the cold, dark New Hampshire winter for Leah! Better late than never, right? 5 years ago

JP Cantos

JP Cantos

DONATION: $50

5 years ago

Jamie Lippman

Jamie Lippman

DONATION: $20

5 years ago

Laura and Tyler

Laura and Tyler

DONATION: $25

5 years ago

Claire and Will Barden

Claire and Will Barden

DONATION: $20

You guys are amazing! God brought Leah to the two most perfect people, best able to care and provide for her every need. Prayers for you and good luck on Monday!! 5 years ago

Benjie

Benjie

DONATION: $36

5 years ago

Hussein Nasreddin

Hussein Nasreddin

DONATION: $20

5 years ago

Jessica and Aman

Jessica and Aman

DONATION: $20

5 years ago